Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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LDMusgrave - 257 days ago.
Hi Sofea! If your little one's ventricle continues to increase, I think they may opt to give her a shunt. A shunt is a tube that is inserted into the ventricle of the brain, and tracked underneath the skin entirely to the abdominal wall (the perinoteal cavity) so the body can reabsorb the fluid. It doesn't go into the stomach, just the open space around it. The entire device stays under the skin. If the brain is experiencing some kind of blockage, an alternate route for that fluid is needed (the shunt) so that the fluid won't put pressure on the brain. It may sound scary, but to a neurosurgeon, it's a very common procedure. My daughter has had a shunt since she was one day old, and her ventricles were severely enlarged at R32, and L 70. She's doing very well! Keep us updated, and add me on Facebook if you like! I am Lindsey Dewar Musgrave

sofea lee - 257 days ago.
Hi all It's my first time here. I have a DD who is now 2 months old. At birth ventricles were R17 and L8. Now R19 L13. Docs just did an MRI last Monday. What would be the possible outcome for her? She's physically normal except that her neck control is still quite weak. I worry for her a lot because I dont know what to expect as days pass.

LDMusgrave - 258 days ago.
When I first received the diagnosis when I was 20 weeks pregnant with Marlena, this is the first website I found. Amy sent me private messages, and in her and Parker, I found a sense of hope to keep moving on. I would look at pictures and videos of Parker while I was pregnant just to keep my mind content on those rough days. Amy really is an amazing woman and her presence in the online world of hydrocephalus support has forever changed our lives. I believe that talking to other parents going through the same things is therapeutic and helps tremendously with the mental aspect of going through pregnancy and beyond.

turtlemom - 258 days ago.
Hey to Shellybrown or any other mom who needs a friend - I'm also on Facebook. If anyone wants to find me, my name is Amy Whisler Hendrix in Oklahoma City, OK. Parker is a medical marvel (like Marlena). Most cases with vent measurements so severe have more issues. So, you can't use her as a measure. And, there are also precious babes like Jude where vent measurements resolved but problems arose (cjengo). He had a stroke in utero and he never developed Hydro but now has other challenges. I believe God has decided you are the perfect Mother for this bundle of joy, no matter the difficulties that may be around the corner. Cherish each moment.

Indigodingo - 258 days ago.
Thanks Turtlemom! Your work and presence here is amazing! I am so grateful for your efforts and support. I am so conscious of the fact that some moms, such as yourself, do not have 'perfect' outcomes - yet you have no complaints. Its really inspirational. I know everyone must make their own choices in life, but I am flabbergasted (no other word really!) ;-) at how many women are advised to terminate: 1, because the outcome could be 'normal' and 2, even if it is not, you can still have a beautiful wonderful child that you love very much. Like I said, I know the choice is very individual, but it does bother me that many women seem to be scared into making this choice with so little real information. I am thinking I need to do something more about it...

LDMusgrave - 258 days ago.
You're welcome, Shelly! When you add me on Fb, please just let me know who you are so I won't think it's a random person. Pregnancy was a very hard time to go through. I was an emotional basket case, honestly. I thought for the worst the whole time. Marlena's head circumference was about 42 cm at birth, and it's currently at 46 cm. She is right on target with her milestones so far. Every single case is different, but I will tell you that I haven't met a family yet who has a child with hydrocephalus that wasn't a happy family! This is Marley a couple weeks ago: http://www.youtube.com/watch?v=l6fTyQNhFUk

shellybrown - 258 days ago.
partyofsnow - thank you for your response and support, I have decided not to have the MRI at this moment in time, I am due back to see my consultant soon so if the vents have dramatically increased I might reconsider. I feel that it will not change my mind about my little one. Glad to hear you son is doing great. LDMusgrave - thanks for your response, I will contact you on facebook because I would love to hear your story, glad your little one is doing wonderfully, it must of been a terrible time for you with vent measurements so high.

turtlemom - 258 days ago.
I've posted a link to empirical data that shows if vent measurements are less than 13mm, the likelyhood of 'normal neural development' is 97%. If vent measurements are between 13-15mm, it is 77%. I'm on my phone so I can't provide the link now. If you scroll back you should be able to find the link. Good luck to all of you newly diagnosed VM Mommies. Chances are you will give birth to a perfectly healthy baby. My baby isn't 'perfect' and I wouldn't trade her for the world. I love her more than anything.

Indigodingo - 259 days ago.
Just wanted to let you know my own personal update - 27 week scan yesterday, almost 2 weeks since we had the scary news the left vent was growing and at over 12mm. Yesterday his left vent was down to 9.8 or so! Yay! I am so happy and relieved. The doctors still want to keep an eye on things as his left vent is still larger than the right and the assymetry bothers them, but there are no other indicators of problems so I am hopeful. It makes me think if I hadn't even had that scan two weeks ago I would never have worried - I would have seen one measurement at just over ten, and then one 6 weeks later at just under. So scary and and worrying to think in other places doctors recommend termination for what I have experienced! I know I am not out of the woods yet, and seems like the little fella (or should I say big fella?) is on the larger end of the norm for other measurements too - head size, femur etc. so not sure if that has any relationship. I want to thank everyone here for your kind and supportive words, it has helped me so much to stay positive. I have been doing my meditations, visualising my boy healthy and strong, sending him love and light. Whether it helped him or not, we probably won't know, but it has helped me a lot! :-) I will keep you updated as to how all this goes for me.

Indigodingo - 259 days ago.
Hi Aug2811, I am so sorry you are going through such trauma! I don't have any answers to your question of what the kind of learning issues may be - and it seems that all the reading and speaking to doctors doesn't help any. I think the answer is they just don't know. It seems it may be anything from 'developmental delays' meaning that baby reaches milestones like holding head up, rolling over, walking, talking etc later than other children, through to more complex issues like trouble learning, impaired motor skills and so on. But the real truth seems to be - no-one knows for sure. This is not like a predictable and definable problem like Downs Syndrome, it is a very wide spectrum of possibility. At one end is the chance you won't even notice anything wrong, then you move on to minor delays that may be un-noticable by the time the child goes to school, through to other more complex problems. The good news for you is that when it isolated, the chances of any problems at all are low. The other thing to bear in mind, is that one measure is not enough to define this problem categorically - the vent measurements can and frequently do change. The key thing to keep an eye on is if there are other complications (you listed the things that weren't wrong, so you are looking good) and also if the vent measurements grow. If they do, there may be fluid that will need draining from the brain at birth (a shunt) - BUT! if they do grow, they may still go down of their own accord - and it seems reading here and other places, that this happens quite frequently (though I have no data at this point to back this up) The over-riding thing that strikes me about this condition is the massive lack of knowledge in the medical field - there is simply so much they just don't know. They are dealing with new information (the ability to measure the brain with new highly developed technology) and the long term data and the exploration of mild variations to the norm has not been analysed yet. All doctors around the world are working from the same few studies that have been done, and now of these are without their limitations. It seems to me doctors know more about the clearly defined hydrocephalus than they do about the subtleties of mild isolated ventriculomgaly. I know you want answers, I do too. But the truth is there is still so much to learn. You can only make your decisions on what information you can get, and what you feel is right. I wish you the best Aug2811. My heart goes out to you and your baby and family.

aug2811 - 259 days ago.
i spoke to Dr's they said in Isolated mild ventriculomegaly 90% the child will be normal but there is always a chance of 10-15% learning disability Can any one explain what kind of learning disability it would be? Isolated mild ventriculomegaly is common in boys than girl. can any one tell me how girls are doing with Isolated mild ventriculomegaly

aug2811 - 259 days ago.
Thanks you very much for responding back and supporting me. samismum & LDMusgrave - plz keep us update with ur posting

LDMusgrave - 262 days ago.
Just to give you all some hope, my daughter's ventricles measured roughly 70mm left, and 32 mm right at birth. No two situations are the exact same, but my daughter is doing wonderfully at almost 6 months old. I love her so much and I am so glad I didn't terminate the pregnancy per suggestion. @Shelly, if you would like, we have an awesome group of moms on Facebook in a support group there, you can find me on there Lindsey Dewar Musgrave. I would be more than happy to offer you support through your pregnancy and tell you about our personal story. Also, fetalhydrocephalus.com is an amazing resource to get information about hydrocephalus. @aug2811 I really think your baby will be just fine! Terminating the pregnancy with ventricles that small and things being isolated seems silly to me! That is only my opinion, I have no medical bearing, I say this from my own personal experiences.

laila10 - 262 days ago.
Hi aug 281, if u did all the tests (amnio, chromosomal, etc.) and the results showed that it is not a case of Down Syndrome, so dont worry. Im pretty sure that when the baby is having Down Syndrome docotrs can detect that easily. Ask your docts. I had a friend, her baby in utero showed VM and she has a sister with Down Syndrome, after tests and MRI docts told her that her baby will have the same Syndrome and they were right. SO , I think (and only God knows) if your docts are telling you that the results are normal, your baby will be ok. You only will have to watch her and do follow up for her VM as all moms of this site.good luck

samismum - 262 days ago.
aug2811, I have been in exactly the same position as you, it's uncanny! My baby is due in one week. Please love your baby and look forward to him or her arriving. The docs do not know enough about this to encourage termination. I have witnessed disability first hand too and nearly terminated my pregnancy. My baby's vents started at 11 on the right and 12 on the left at my 20 week scan. By the time I was 32 weeks I had had several MRI scans, Ultrasounds, blood tests and also an amnio. At one point I was told the gap at the back of the brain was too large (cisterna magna) the legs were too short, the vents went up to 17mm left and 14 right, Also the surface of the brain was over matured and abnormal. I stuck to my instincts and reading this forum gave me great encouragement. I just felt my baby was going to be alright. Don't get me wrong, it's has been the most frightening time I have had to go through. In the last MRI scan I had at 32 weeks I was utterly shocked. I had a meeting with 4 consultants, one was the MRI consultant, one neurologist, and others were from the senior medical management team. They told me that in the last MRI scan, the vents had reduced to 13 R and 15 L and that any other problems they had brought up in the past had all corrected themselves. The limbs were normal, the surface of the brain was normal, the gap at the back of the brain was normal. These were the same people that had encouraged me to terminate 2 weeks beforehand. As I'm due in a week, I wanted the head measured as sometimes ventriculomegaly can enlarge the head, making a natural birth difficult. I only had a scan to measure the size of the head to help me decide my birthing options. To my surprise, the doctor doing the scan said that my babys vents had reduced further. 12mm R and under 15mm L. This means my baby has isolated mild to moderate ventriculomegaly. A positive outcome in this category is over 90%!!!! You also must remember that vents up to 12mm on either side or both sides can be a 'standard variation' which means your baby is normal, vents of this size are very common in boys. Please believe in your baby and in your gut feeling. Most cases of enlarged vents correct themselves by the time the baby is born. Your babys vents are normal in my opinion, I'm not a doctor, but please just read the stories on this forum. I just know that when my baby is born and has an MRI at 2 months old, they will say that everything is normal. I just know it, don't know how but just feel it. I don't have my head in the sand, I just feel I will love this child whatever, but the odds are so good that all I can feel is positive, which is very good for the baby. The docs are just too quick to encourage terminations. You could be aborting a completely normal child. Please please please give your baby a chance. Wishing you all the best in your journey xxxx

aug2811 - 263 days ago.
Hi i am new to the site. i need help... i am 26 weeks and recently in ultra sound they found that the ventricles are slightly high and they refered me for an MRI. i did MRI and came to know that the baby has Isolated mild ventriculomegaly .both the Left and Right ventricles has 11mm. in the MRi they said 1) Brain Development is normal,2)Mid-line Structure is normal, 3)No evidence of obstruction, 4) no evidence of bleeding, 5) diffusion is normal. in previous test they looked for infection, amniocenteses, trisomy, down syndrome and other chromosomal every thing came out Normal i want to know the out come of this pregnancy. i am so confused should i keep it or terminate this pregnancy. i need advice... i have sister with down syndrome and i have seen my mom struggle. i am worried i cant take the pressure and if some thing happens to me who will take care of my child is my big ? plz help me out

partyof5now (Sonya) - 263 days ago.
shellybrown - Sorry you are going thru this, its alot to go thru especially when your hormones are already on such a rollercoaster. Turtlemom might have some insite for you, her little girl had rather large vent measurements as well...I think larger than your little ones is measuring. My sons vents measured just over 14mm & we were told brainloss in that area as well...the MRI inutero confirmed it.We had all the blood tests early on, torch tests that all came back fine then at 29 weeks this popped up so we did more blood tests for infections that came back clean & an amnio that came back good as well so my sons was isolated. Thankfully he was born perfectly healthy, his left vent at 1 day old was still slightly enlarged for no aparent reason & was told should cause him any issues. He does have Physiological anisocoria that we noticed & an eye doc diagnosed him with at 3mo of age...which is 1 pupil is larger than the other & that pupil happens to be his left which is the same side of the enlarged vent but we were told it is unrelated. We chose not to put him thru another MRI when he was 8 mo because he didnt want to have him put under, IV & then stapped down...he is doing great, we love him regardless & if something starts popping up down the road then we will cross that road if we get to it. So I can understand why you are hessitant to do another fetal MRI tho, i didnt much care for mine & it startled my poor son so much that he was a bit jittery for a few hours after as well. I guess you have to sit down & figure out if that second MRI will be beneficial in your eyes at all...yes it may show clearer if vents have increased or decreased but will it change your mind about your little one? nor can docs do anything about any issues at this point till little one is born...its tough but I would weigh the options & go with what you feel in your heart. Best of luck to you & your little one

shellybrown - 264 days ago.
Hi everyone, I am new to this site but have read many of your comments and they have been so helpful & you have given me so much strength. I would like to share my journey so far. I am currently 29wks and found out at my 20wk scan that my babies vents were severly enlarged at 17mm. We were referrred for an MRI and the vents were R18, L12, also there was some damage showing to the temoral pole areas on both sides and small cystic areas on the parietal & occipital which could affect sight & hearing. I have had an amnio, CMV and Torch tests done all negative. The vents did remain stable at R19 L11 and then at my latest scan 27 wk, the right has increased to R24 L11, the consultant was very negative & said her head was abnormally large now & also was concerned with her eye sockets as one measured slighlty more than other. We did have a 3D scan & she looked so perfect. It has been such a rollercoaster of emotions, they have repeatedly asked if I want to carry on with the pregnancy, giving me the worst possible outcomes. I believe in my baby and that she is a fighter as I have previuosly suffered 6 miscarriages and she is the result of a frozen ivf cycle. I am trying to stay positiv but get knocked back down every time I go for a scan. We have been referred for another MRI at 31 wk but I am not sure if I want my baby to have another one, as I am positive the 1st one stressed her out as she was unsettled all night. I am in the UK and can't seem to find many support groups or others in a similar position. I am so glad I found this site, thank you so much x

Canadianmom74 - 267 days ago.
Hi ladies, just thought I'd give a quick update as you were all so helpful. My SIL went into labour at 34 weeks. The girls seemed fine at first although the one with hydro had an odd heart beat one day. They placed a shunt when she was 5 days old. All seemed fine in fact the specialist did not seem to think she had had a stroke in utero after all. On day 6 she was rushed by air ambulance and had to have open heart surgery as she has a valve problem. It was a very scary time. She is now at the original hospital and her sister may get to go home any day and she may not be too far behind. Thanks so much for all you support. We only found negative outcomes on the internet until we found this site. You gave us hope and now we continue to be very hopeful for Chloe's prognosis.

turtlemom - 268 days ago.
Hi Indigodingo, Obviously, your baby is in good hands with you as his/her Mom. Blessings to you both!

Indigodingo - 268 days ago.
Hello everyone! Hope this message works properly. Just came to introduce myself - like so many others here I have had confusing and distressing news about my baby having an enlarged ventricle, and like so many others here, reading these messages has been a great consolation. My quick details: 21 week scan showed one ventricle at 10mm or just over - we were told not to worry (and I really didn't) and to come back to check in 4 weeks. 25 weeks showed 12mm or just over - with 3 different people including a specialist doing the measuring. We were told 'as long as it is isolated (which it currently seems to be) and doesn't grow there is nothing to worry about.' We are to go back for another US and possible MRI in about a week and half. I am 37, early genetic testing showed no problems or risk. Have not yet had a blood test or amnio. Then of course the worry started - what if it isn't isolated? What if it does grow? So many what ifs.... I am calmed being here, and I dreamed last night my little boy said to me 'stop looking for things that are wrong with me!' :-) Of course though I want to be realistic and prepared. I just want to say though, the thing that freaks me out most of all, is how 'educated' doctors seem to be making such rash decisions (the advice I have read here for late term tx) base on such little knowledge. And how they really don't know very much about this at all. I have been a researcher in my career, and it strikes me that here we have a new set of data coming in - the new ability to measure ventricles on ultra sounds due to technological advancements, that has not been matched by improvements in application of that knowledge, longitudinal studies or even very basic counseling methods. This to me is appalling. 1. It is obvious doctors don't have enough information to understand variations from the norm in how fetal brains develop. They know basic normal, and they know extreme variations that are damaging. Now we can measure these variations with more accuracy, I hope someone somewhere is gathering this data and studying it properly. This should then peer reviewed and widely shared. 2. These studies should also be followed up with long term studies, including a control group of those with so called 'normal' ventricles all the way through pregnancy, those who's vents changed during pregnancy, and those who's were enlarged at birth and beyond. Not just early developmental milestones, but performance in school etc. And who knows, there may even be some clustering of abilities associated with this symptom, not simply 'delays and problems.' 3. It is not simply the lack of information about cause and treatment of this symptom/condition that concerns me, but the seeming lack in the medical community of any curiosity about it. It seems like not only do doctors happily admit they know nothing about this, they seem to not even care that much. Is it age related? Environmental? Heritable? Are there any improvements seen when taking DHA supplements or not? Why is no-one studying this???? 4. The greatest travesty of all - the abysmal counseling that occurs around this. That so many women are advised to terminate what may turn out to be a perfectly healthy baby, that so many women (and their partners and families) suffer so much pain and sadness and confusion is just unconscionable in my opinion. That we have to scour the internet to find scary medical articles (clearly all that many of these doctors have read), that the only way we can connect with other women going through this is in pregnancy forums or through some brave pioneering women's blogs, is just not good enough. This thread is the third most popular pregnancy one on this site (after the general one and the one about later age pregnancy) - that is amazing. And I have yet to find a better forum or site. There is no easy to access information anywhere out there for mothers and their families and friends. The medical community really needs to step up. All of this really is not good enough. Lives literally depend on this! I am sorry, I am by turns scared and sad, and optimistic too - but my emotion is currently manifesting as outrage. I am hoping I can direct my energy productively! This is my first stop. Thanks to anyone who bothered to read this far. And thanks to everyone who has posted - I have read them all! You are all amazing women coping so well with such distressing uncertainty, and offering so much to others with your kind words. You help me to feel stronger. For that me and my baby thank you!

deedee26 - 277 days ago.
The way the doctor explained was that the ventricles at the top were like 11mm but the one in the back has gone from 16mm to 25 mm since 29 weeks am now 33 weeks and her head has increase bit more than it was before because before her head was fine when I has the last scan at 30 weeks now its a bit bigger than what it should be. This is so confusing but thank you for clarifying it for me turtlemum!!

turtlemom - 277 days ago.
Ventriculomegaly just means enlarged ventricles. Hydrocephalus occurs when there is some sort of blockage or overproduction of fluid. Some physicians use the terms interchangeably but technically there is a difference. If a shunt is required, the condition would be considered Hydro because there is some sort of blockage and the shunt is required to allow the fluid to flow. You can have ventriculomegaly (just large vents) with no blockage = no shunt. But when you see an increase in vent measurements, that is when you know it is hydro. If the vents are large but stable, then it is ventriculomegaly..

deedee26 - 277 days ago.
Thanks ldmusgrave!! U added me on ur Facebook remember!! Lol! I have a question. The doctor never said it was hydrocephalus she just said she is going to need a shunt! Does having a shunt stops been called ventriculomegaly and becomes hydro or can ventriculomegaly also have shunts am a bit confused! But I don't want to read it on the Internet cos the more I read it the more freak out I get an am trying to be calm an positive with her outcome but also preparing myself for what it's going to happen but I don't want her to feel that I am upset because of it if u know wat I mean. I know we going to have to go through many things if the shunt does happen but I just want her to feel love an happy an secure. I don't know if I am making myself explain properly sorry for the big muddle of words. Anyways am just trying to figure it out when does ventriculomegaly becomes hydrocephalus?

LDMusgrave - 278 days ago.
Hi Deedee, are you on Facebook? We have an awesome group of moms who have babies with hydrocephalus (most with shunts.) I am Lindsey Dewar Musgrave on there. Turtlemom was the first mom I met, her and her daughter are sooo amazing! My LO is 5 months old and her ventricles measured 70 mm and 32 mm. VERY LARGE! She's doing really well so far!